Meet my Ben

The other day, my oldest son Noah was visualizing the future he and Benjamin would share. They would run a tree business. Ben, they agreed, would go up the tree and cut the branches: he is my durable, athletic son. Noah would meet the customers and operate the truck: he is my intellectual, fast talking son. Noah and Ben often envision their future and it is always a shared one. In his four short years, Ben has been a shoe salesman, a dentist, a train conductor, and most often, a farmer with Noah in charge of the chicken coop.

On this particular day, we were in the car and I was eavesdropping. Tears rose in my eyes as I acknowledged the truth. Ben will probably never get the chance to be any of those things. My heart aches for the future of my sons. In their planning, they are forming a brotherly bond which will guide them through the world: one that they would normally turn to for strength. This is perhaps my greatest and most acute sorrow – the lifelong loss that will be felt by my two other children. I cannot, perhaps because my own close sibling relationships, imagine Noah and Isabelle without Ben.

As a mother of a terminally ill child, the sleepless nights, constant medical care and emotional stress can tempt you into self-pity. But when your child rejects his limitations, shows an amazing resilience and love for life as Ben does during his speech, physical therapy and sign language sessions you are provided with the strength and determination to meet the challenge of your life. And so I play along – allow myself to dream. I ask, "What will Isabelle’s job in the tree business be?" From way back in the car, Ben’s gentle voice answers, "Isabelle pick up sticks."

Please come. Meet my Ben. Grab hold of his hand and help him set one foot into the future. A future that he and his big brother dream of.

My deepest gratitude,

Jennifer – Ben’s Mom

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